My Cyber Knife Adventure

[gary.s]

Hi Jessica,

Yes, I am feeling much better, thank you. Instead of being a rock star, maybe it is more fitting to be just another AN warrior. Just gotta keep fighting and not giving up.

I found that vitamin B complex has helped tremendously. Especially B12, which is a key player in the function and development of brain and nerve cells. So I have been eating well, taking lots of vitamins and getting rest. As a result, I am feeling back to my AN normal with just a little residual pain left over from the trigeminal nerve shocks. I don't wish them on anyone. You are a rock star also Jessica.

Gary

[SP]

Hi Gary,

I haven't been on here for a little while so just caught up on your progress...

I'm so glad you found an alternative to the meds that works for you , that nerve pain firing is intense.

I developed shingles earlier this year and of all the nerves the virus resurrected itself via a cranial nerve on the right eye side (opposite to AN) of my face. Felt like intense electric pain firing through my brain - thankfully lasted only a short time - and is OK now.

It's great that your vitamin and stress management tools have brought that nerve back to calm for you ... your strength and resolve to keep managing the hard things is inspiring, be well.

Stella

[gary.s]

Sorry to hear about your shingles Stella. The electrical shocks to the face are something else, especially when added into the rest of our issues. It just seems like it never ends, just another day in our lives. I am doing much better, thanks for your support. I just pray that the trigeminal nerve shocks do not re-appear.

I have known several people who had shingles, not a good thing. I am happy to hear that you are doing okay now. Fall weather is beginning here in the Arizona desert, waiting for the rattle snakes to go away so I can go hiking. All is really okay, knock on wood. Be well and stay healthy Stella.

Gary

[Ionman]

Greetings All,

I was wondering if those who had CK could post their treatment GY dosage values. I’m considering CK for a 2.5cm AN at Kaiser SSF for 3 days, 6 GY each, total 18 GY. Just hoping I could get some values to see if this is in line with others.

Thanks!

[ppearl214]

Hi Ionman and welcome! My AN was 1 cm. I had CyberKnife in April 2006. 5 days, six Gy for total of 30 Gy. I had a lot of serviceable hearing. The goal was to save it. They did. The forums are a wealth of information. There are lots of us that have had CyberKnife done. Again, welcome to the forums.

[Crazycat]

Hi Phyl!Where have you been? How's Capt Deb? Have you heard from her?

[notaclone13]

Hi Phyl,

It’s nice to see you posting on the forum.  I have been following your story since I was first diagnosed and came across an inteview if you on YouTube regarding Cyberknife treatment of ANs. I think it fair to say you are a pioneer patient in this treatment  approach. Thank you for all the information, personal experience and positivity you have shared with AN patient’s through the years. Just the other day I was wondering how you were doing now many years after your treatment. I know I speak for many in thanking you for your wisdom, enthusiasm and willingness to share.

[mwatto]

What hearing aid did you choose? My hearing is not much affected but I get deep earache and audiologist told me mild hearing loss that I could do with amplification and get used to wearing one...will be trialing options this week.

[gary.s]

I have the Phonak Cros B. My AN ear is not functional with almost no hearing left in it. The Cros B is essentially a microphone that sends any sound on the AN side to the hearing aid in the good ear. So now I can hear sounds on the AN side, although I do not know which direction they are coming from. If you still have functional hearing on the AN side, this setup may be wrong for you.

Lots of decisions to make, and hearing aids are very expensive. Make sure you are really in need of hearing aids at this point in your AN journey. Your hearing will probably change over time, especially as we get older. Hearing aids that can be programmed for changes in your hearing over time is really important.

Best of luck.

Gary